Good evening everyone and welcome back!
Thank you for coming back by to check up on sis and our family.
We hope everyone from our neck of the woods and anyone else in winter weather areas are staying dry and warm.
Here in Illinois we had some wind accompanied by rain then some snow that thankfully didn’t last long. But boy was it cold today!
I picked up the boys from each of their schools and standing outside for 15 minutes had me dreaming about sitting next to a warm fire place with a cup of coffee in my hands. I’m a huge coffee lover 😄 otherwise I would have said a cup of hot cocoa.
Our girl is doing good today ( knocking hard on her wooden slide board). She had her home tutoring session with the lovely miss Jackie this morning and did wonderful without a headache complaint.
Jackie I have to tell you thank you !
I can tell she’s really enjoying your sessions together. She really misses being at school with the other kids but your visits are something she looks forward to.
She even showed me some math that your working on. For Ceci that’s HUGE since math has long been a struggle for her.
So thank you for helping her feel better about it. 💜
Ceci is continuing to be home schooled for now because she is still recovering and her body needs time to heal.
Between the long hospital stays and the ongoing infections and pain she hasn’t gone to school at all this entire school year 😔
Some days Aiden and Nicky get a little rowdy and loud, like 7 and 8 year old boys do and it can cause our girl to seek out her room.
Loud noises have been causing some increased headaches along with the weather changes.
Her doctors,me and her dad have decided that it would be best to discuss our girl starting school in early spring to give her body more time and also in hopes that Cec won’t catch any of the flu or pneumonia bugs that have been going around.
In early spring we’ll start with half days and then progress her into going back fulltime as she can tolerate the hours.
This is her 8th grade year. She’s bummed that she can’t be with her friend’s and peers but she does also understand how important it is to heal.
She’ll be starting high school next year so we’ll want her as strong as possible for her next big life journey.
High school….. I can’t even believe I’m typing those words out!
Where did all these years go?!?!
So many of you remember our little girl when she was a tiny little pumpkin scooting all over the house with her big beautiful smile.
Painting, singing, playing dress up and all while I posted on a site called Carepages to keep everyone updated on her battle and to bring awareness to all our Spina Bifida warriors ❤
Now she’s 14 and we’re thinking about wheelchair accessible cars for her to start driving, high schools and not much longer-colleges.
This sweet 14 year old girl has been through hell and back too many times to count with her health but looking at these photos you’d never guess.
And that’s what I love about her. She holds strong to her faith through the hardest moments and even when she wants to cry she tries reassuring everyone she loves with a smile.
Things have still been very hard for our family financially with myself only working about half the year and taking unpaid leave for the other and sometimes I want to just break down and ask why?! But then I see little miss at home and doing so much better than a few months ago and I know that’s what counts. She’s still smiling and for myself that’s the biggest win 💕
Ceci also had physical therapy today and did wonderfully. She’s gaining use of muscles she hasn’t used in years and we continue to see flexion coming back in her ankles and knees which will help prevent more fractures and breaks in her lower extremities.
She’s working so hard on strength building and never complains that it’s too much. She has her days that she needs an extra dose of extra strength tylenol and the heating pads but since we came home from the hospital in October she’s only cancelled a p.t. appointment once because she had a migraine.
We’re hoping that once we get her side surgically closed and repaired that we’ll be able to get her back in the pool for some swim therapy.
Of course until summer comes back around, we’d have to find a location that specializes in pool therapy. She misses swimming so much! It’s really become one of her favourite things to do.
We’re hoping once our finances get better next year that we’ll eventually be able to get her and the boys a hard sided permanent above ground pool and extend our deck around it for easier transfers of sis 😁
Our family is a huge outdoors kind of family so swimming is a huge enjoyment for us all. It’ll help so much with Ceci’s joint pain, osteoporosis and her back muscles from the scoli surgery. And if our girl can get so much enjoyment and will also get huge benefits from water therapy it’s a win win all around.
I just took another look at the picture of sis sitting on her bed and it still hits me everytime.
I can’t believe how much straighter she sits after her scoli surgery.
It has changed things in so many ways and we’re very happy to say after her long stay and her intense p.t. she’s doing much better with the back and side pain.
Honestly it’s pretty much non existent now.
It has one of the hardest recoveries she’s ever had but the benefits are showing and we’re only 2 months out from her last spinal infection and her last back wound closing up.
I can’t wait to see where our girl will be strength wise in a years time. She dreams about getting back into a manual wheelchair (it’s been years since she’s had the strength) to be able to play wheelchair basketball someday and I believe with how hard she’s pushing herself everyday that she’ll accomplish this by this summer.
God is so good 🙌🙏🙌🙏
We wanted to send some cheer mail shout outs 💕
Sis’s recieved some very sweet Christmas packages in the mail today from our sweet Facebook family members miss Cristina and Fiona and also miss Roberta.
Thank you so very much ladies for thinking of her 😁 I will wrap up these wonderful gifts and place them under the tree for little miss.
I’ll be sure to post pictures of her opening them on Christmas.
Well dearest friends it’s time to call it a night.
We hope that everyone’s doing wonderfully here and if you celebrate Christmas that your tree is up and your heart is full 🎄
We have the Christmas spirit going full force here with our angels out, lights up, Christmas tree flowering, Christmas music playing and have started our Christmas baking sessions.
Our kids have been in the spirit and we love it!
I know Ceci and the boys would love to see everyone’s Christmas trees/ Christmas decorations. Post a picture in the comments to share 😊
Be back real soon.
Lots of love and hugs,
Alexis, Cecilia Marie and Our Special Family 💜
~ Spina Bifida Fighters and Survivor ~